5 Tough Choices You Face When Chronically Ill or in Pain

Chronic pain and illness require the courage to make tough choices.

Suffering from chronic pain or illness—or, as is often the case, both—is hard work. One reason for this is that we must constantly assess and evaluate if we’re managing our health and our relationships skillfully. This requires us to make tough choice after tough choice. Here are five of them that we continually face.

1. Do we push our body to the limit or do we always play it safe?

Sometimes, the desire to be like healthy people is so strong that we can talk ourselves into pushing our body to do what it cannot reasonably do. About two years ago, my granddaughter Camden was visiting. I was so frustrated by always feeling sick when she was here that I decided to “act healthy.” We have a park next door to our house. I took her there for over an hour, helping her with the slides, pushing her on the swings. I was in a defiant mood: “I’m tired of being sick. I’m just going to act as if I’m healthy.” What I got for my effort was a week of payback with exacerbated symptoms.

On the other hand, I find that if I always play it safe, my body gets so used to the strict regime I put it on that I lose my ability to be flexible at all. For example, if I always nap at noon sharp, then if I’m fifteen minutes late one day, I feel like I’m going to collapse on the spot. So I purposefully mix up the exact time I nap so that my body doesn’t become conditioned to following a rigid schedule. That said, my ability to be flexible has its limits: I don’t have the luxury to just skip the nap.

If it’s possible for you, I recommend a middle path of gently challenging your body now and then so that you don’t fall into a fixed pattern of behavior that underestimates what you might be able to do. But, as with the other tough choices, I find this constant assessing and adjusting, assessing and adjusting to be exhausting in itself, both mentally and physically.

2. Do we keep our health problems private or do we talk openly about them?

If we talk about our health problems, some friends and family members may respond judgmentally or even turn away from us. And even those who don’t turn away may change the way they relate to us. We want to be treated as whole people and as adults, but if we share our health struggles with others, we risk being treated like a shadow of our former selves.

On the other hand, if we keep quiet about our health issues, we risk leading others to misunderstand what we can and cannot do. In addition, by keeping quiet, we’re passing up the possibility of receiving much needed support—both emotional and practical.

If you’re like me, it can be exhausting, both physically and mentally, to continually assess and decide what you will and what you will not share with others about your health.

3. Do we ignore a new symptom or have it checked out by a doctor?

If we raise a new symptom, will our doctor think we’re being oversensitive or that we've become a hypochondriac? On the other hand, a new symptom could be the sign of something serious. I read in one of my chronic illness books about a woman who ignored a new symptom because she decided it was best to assume it was related to her chronic illness. She also said that she waited so long to see her doctor because she “didn’t want to bother him.” The new symptom turned out to be stomach cancer.

What to do when a new symptom appears necessitates making another tough choice: wait or act immediately? We have to listen carefully to our body and decide for ourselves.

4. Should we risk trying alternative and unconventional therapies?

There’s no right or wrong course of action here, but it’s a choice that, for me, has been costly, both to my pocketbook and, at times, to my health. I used to spend hours and hours, using up what little energy I had, combing the Internet for cures. As I wrote about in my piece “Finding the Health Information You Need on the Internet,” anyone can create a website, set up a payment plan, and ask for your credit card number. People spend thousands of dollars on false cures. I know because I've done it.

On the other hand, I’ve also read about people who’ve been helped by alternative or unconventional treatments, so it may not be wise to decide to disregard them entirely. These are tough choices: what to take, what not to take, how to assess the monetary costs, what to tell our doctor about what we’re taking or not taking.

5. Should we aggressively fight to regain our health or should we accept our fate?

Constantly fighting to regain our health is also exhausting, physically and mentally. But the alternative of passively accepting that this is the way we’re going to be for the rest of our lives doesn’t feel like a wise choice either. Again, I recommend a middle path. It took me a while to realize that I could acknowledge and accept my health as it is right now, while at the same time continuing to try to regain the health I had before I got sick. These two courses of action aren’t contradictory.

It wasn’t until I began to accept—without aversion—however I happened to feel on any given day, that I was able to begin looking for ways to enjoy my life again. But an integral part of that life is keeping an eye out for new treatments. It can be a challenge to gracefully accept how I feel at the moment, while at the same time continuing to be proactive about my health...but I'm working at it.

***

It's hard work to continually assess, evaluate, and choose a course of action while already sick or in pain. My wish for you is that you be as kind to yourself as you possibly can as you struggle with these tough choices.

They won't tell a new doctor that they have ME and CFS because they don't want to deal with the disbelief, the stigma, the ignorance or assumptions. Some go so far as to stop going to doctors all together or they go to walk-in clinics for non CFS or ME related issues. They never see the same doctor twice.

Many ME and CFS doctors won't see a patient without a referral perhaps reserving their time for patients who have already been screened for other diseases. On the other hand it also means in essence that they are turning away the patient who needs their help, but can't get a referral.

Toni,
You have described my life almost perfectly. Being chronically ill has been a full-time job in so many ways. For me, I literally spend all my money (and some of my relatives' money) on an experimental treatment each month. This treatment has given me some quality of life and allowed me the ability to spend some time not being home bound and to generally experience fewer debilitating symptoms. But it comes at a very high price, not just economically. I must spend several hours a day detoxing and taking prescription pills and supplements on a tight schedule, fitting it all in on the twelve or so hours I am awake. Since people don't see that part of my life they don't have any idea what my life is really like and they wonder why I don't "move on" from being ill. I live a very unusual life, choosing between being housebound and in pain ALL the time or spending all my money and much of my time on an expensive protocol that provides SOME quality of life with the POSSIBILITY of some real improvement. Only those closest to me have any idea what I face each day and that in a very real sense I am fighting for my life. Thank you for reminding me that I am not alone.

It's such a relief to read something by someone who really knows. I couldn't agree more that these are tough and tricky issues. One choice I find myself having to make all the time is when I get a call from family or friend and they ask how I'm doing. I don't know first of all if they are really asking or just making conversation. Then I must decide whether to tell them the truth... "All I can manage is staying in bed all day " or "about the same," or " not good." this is often followed by a question about what treatments I'm getting...what the doctor says, etc... To which I respond along the lines of " None," "the doctor has no answers,"...by this time I'm exhausted. On the other hand I feel like I'm betraying myself if I say "fine," or "better," when I really am feeling awful. Some people can't help running away when faced with chronic illness. I totally understand. But when they do I feel I've lost one of my tenuous connections to the outside world. I can't talk about plans because I have no idea how I'm going to feel tomorrow. I can't talk about things I've done...because I haven't done anything. What to do? That's the dilemma, the choice I have to make.

I also find talking about my health to people a tricky business. How to keep the relationship going with people I really care about, especially in the way that I want?
I particularly relate to the conversation issue you mentoned. I want to share my life with my friends, but I run the risk of having to talk about my health all the time. The conversation usually starts with "how is your health?" anyway and if not, the question is asked as soon as a gap falls.
I am glad my friends still want to know how I'm doing and that they haven't run away. But on the other hand I don't want to be 'their sick friend'. I spend almost every conversation finding that balance.
I also wreck my brain sometimes trying to find something non-health-related I can tell. Some anecdote that doesn't start with "When I was at the doctor..." or "I saw on TV..." That was very recognisable in your comment.
Thanks for sharing.

I'm always looking for that middle path in talking to people too. If you have my book, "How to Be Sick," you might recall that when I began talking to my two grown children about matters other than my health, I found it to be a welcome relief from every conversation revolving around my health. It was then that I also realized how hard the change in my health has been on them, even though they've never complained.

Finding the right balance is tough. Thanks to both of you for sharing here.

I posted this on facebook and asked all my friends to read it. I described it as a PERFECT description of what it feels like to live in my head, as a person who looks well but isn't. I have said much of this to many people, but never so well and there's something more legitimate about it coming from someone who isn't me (doesn't that suck?). Anyway, I'm going to spread this article far and wide and suspect I'll be using it as a tool to improve the quality of my social life pretty much forever. THANK YOU!

This article does seem to have struck a chord with so many people. I think it's great that they're sharing it with others. It's the only way for others to know what it's like for us and, in your case, with the information coming from a third party (me!), maybe people will really listen.

Thank you, Toni. These are excellent questions. As I answered each one for myself, I thought "over time, my answers will change and change again". So I will ask myself these same questions a few times each year, look at any changes in my situation, and adjust my answers accordingly.

Of the five questions, #5 speaks most deeply to me........ With your words today, I now see my constant struggle to feel better, to do more, to be other than I am as an attachment to my pre-ill self........not being in the present and ultimately an 'exhausting' trait. I will add #5 to my daily practice of affirmation........... thank you, Toni

I, too, was terribly attached to my pre-ill self, as you so aptly put it. It was only when I let that go that I could start to heal mentally. This is the major theme of my book, "How to Be Sick." It was that important a change for me.

Thank you, Toni, for being able to put into words what many of us feel but are oft times unable to express.

It is indeed a "fight" and my wife and I refuse to give up! Do what you can, when you can, and know your limitations.

Also love the concept of naps and varying the time. When I was in the service I was working out every day after work. One day I had an appointment right after work and within 10 minutes my body said, "well, if we aren't going to work out, I'm taking a nap!" and I kept falling asleep on the person!

It is amazing to me how you are able to sum up and express our experience in such a beautiful, honest and organized way. Thank you SOOOO much for your work! This article addresses exactly how I've been feeling lately and speaks to how very difficult, time consuming and exhausting everyday decisions are. I have been wrestling with acceptance vs. pursuing new treatments and trying to figure how much info to divulge to friends and family. I have watched certain friends drift away which is painful. I think I am getting closer to figuring out which friends I can talk to about what, but I am such an honest person that it feels unnatural to hide the truth. I'm working hard on it! One thing that CFS steals from us is the ability to be spontaneous. We have to so carefully think and plan out every minute piece of energy we might have or suffer the consequences. It makes me so utterly sad that I can't just pop over a friend's house to say hi or play with their kids. I can so relate to the story about throwing caution into the wind when going to the park with your granddaughter. I occasionally do that too when family comes to visit but it feels so crummy afterwards when I am in bed feeling so sick as a result. We are basically being punished and physically harmed for having fun which is very hard to cope with. Dealing with CFS and coordinating one's health care between all of the different specialists we see and who don't talk to each other for an illness that has no real treatment is definitely a full time job! Too bad we don't get paid for all of our hard work. From the bottom of my heart, THANK YOU for writing this!

Beth, your comment about our illness robbing us of our spontanity just struck a chord with me.. that is exactly how i feel.. yes every little detail of my days have to be pretty much planned out and even that is subject to change depending on how i feel that morning or that moment i'm supposed to do it. I can no longer just grab my purse and say im going to the store or something..a store trip is a long thought out process now, a list must be made, my oxygen tank must be filled. my boyfriend must be feeling ok to drive and most the time we have to wait till his daughter gets home because he cant walk the stores either so he has to be pushed in a wheel chair, so then i tax myself and rather than ride a scooter i walk a cart, so i am beat after a few minutes if we dont get the right day.. nothing is spontaneous anymore.. :(

I've been thinking about how we can't be spontaneous anymore and how devastating that is. Perhaps I'll write about that soon. Reading through your experiences is like reading my own…and yes, too bad we can't get paid for all this hard work.

When I woke up, I felt as tired as I can feel and still be minimally functional. I've learned, mostly the hard way, to gauge my energy level first thing in the morning and accept it. I've found that I rarely add energy through the day so I try to live within that initial evaluation.

My son, who really didn't want to ride the bus, was chirping for me to try a shower, which I did. I really wanted a shower bad since I didn't get to have one yesterday. (Any one with tips on that one?). I took the easy does it approach for prepping breakfast and lunch. He took the bus. I was grateful not only to have good reasons to wake up and get moving, but grateful that I recognize my limits sooner than I used to and slow down voluntarily. It just doesn't all depend on me. I think I'm learning how to receive love as simple compassion.

I was so proud that I listened to the still small voice that said postpone your appt. I was rewarded with the memories of times I didn't listen and forged on, usually being unable to leave a place when I was ready to go because I would be thoroughly exhausted.

I connected with what you wrote, Toni, and was happy to stumble upon your writings. I've been dealing with this mostly with people near me and never thought to reach out electronically.
Bonnie, I relate. Most times when I feel terrible, i look good. Other times, like today, pain and exhaustion are obvious. Lately, I've been in denial and just kinda gloss over, I told some people, acquaintance type, that if I'm good enough to be up and out I sure don't want to talk about being in the bed or what doc said what, etc. Drop by on a day when I can't get out for that. Others think its depression and I can't correct them because it brings a smile to my face with some of their helpful hints. Oh well, I look for laughter in it and most mean well.

I don't have much contact with many people, so showering just isn't a priority for me. A warm, wet washcloth to minimize serious odor in between 2 showers/week works for me. It doesn't take long for your scalp to reduce the oil it produces, so your hair won't look or feel dirty if you shower less frequently. When I know I'm going to be in close proximity to others and it matters, I try to shower the day before, so I have the energy I need to do the thing I needed to shower for. It's all about prioritizing. I'm constantly asking myself: "what's really important?" There are dozens of things that are better for me to do on most days, than to use energy being squeaky clean. If you haven't read "The Spoon Theory," I strongly suggest you do. Find it at www.butyoudontlooksick.com.

ME stands for Myalgic Encephomyelitis and is the name give to Chronic Fatigue Syndrome in other countries, such at the U.K.

I am so glad that you listened to your small voice and did what was best for your body. I don't know if you have my book, "How to Be Sick" but I talk a lot in it about how essential it is to treat ourselves as kindly and compassionately as we'd treat a friend in need.

Isn't it a shame that showers have become so tiring? They used to be such a treat.
I find keeping clean quite a task now too, since I am sick. And at the same time very important for my sense of well-being and and self-respect. Keeping clean is an act of self-compassion for me.

I have various methods for washing, depending on how much energy I have and what needs to be done.
If I have a good day and can afford the energy, I take a shower sitting down. I use a cheap plastic fold-up chair. You know, the small simple ones for in your garden. I still love it when I can do it.
On a bad day I just wash myself with a facial wipe, or baby wipe, something like that. Either just the essentials (face, armpits, feet) or my whole body. You are clean and feel fresh and you don't have to towel down.
If I need to wash my hair as well, I do it sitting on my plastic chair in the shower, with the shower head, bending forward so only my hair and feet get wet. That makes a lot of difference for me compared to a shower. (Make sure your towel is within reach.) This will not work if you have a bad back, however.

I have also found hot showers a bit more draining than colder ones, so I make sure that the water isn't very hot, or I use luke-warm water to rinse at the end.
Because showering is so exhausting, I have found that I brace myself for it by holding my breath. Since I know this, I try to be mindful of my breath and relax the weight of my body to my feet and/or bottom. This helps me quite a lot.

I need to blow-dry my hair if I want it to look it's best. I don't know if you do that. I have found that sitting down for just a few minutes between washing my hair and blow-drying it can make a big difference.
And again I use cold air afterwards to cool my head. It seems to make a slight difference.

Like Anonymous, I plan the washing of my hair on the days before I have to do something, so I don't need to do both things on the same day. If have bed head, a little water and a round hairbrush will usually sort that out.

Hope some of this helps you. Good luck with finding and keeping your balance and coping with all of the other points Toni mentioned.

Dear Toni, yes it is an exhausting full-time job being chronically ill.. ok first of all I do find that you have to pick and chose who you talk to about your illnesses and what you tell them. Like I tell my boyfriend everything because he is my dr before i see my dr. but then what i tell my daughter is almost everything but just enough so she wont worry to much, where as my boys i dont tell them much at all just enough to know how its taking a toll on me.
As for every little new ache or pain that comes up,, well i run it by my boyfriend first and he decides if we ride it out for a bit and see if it gets worse or if we make an emergency call to the drs. nurse or wait till our next appt. he has alot of experience in the medical care field..and he is chronically ill as well..
as for over-doing ourselves.. yes we are guilty of that. we do know our limits but sometimes on good days we will purposely push them and do more work then we should and we pay for it for days afterwards.. Like this past weekend. we had to work on our car to get it running for a dr appt on Monday.. we worked saturday put a good days work in got everything done that needed fixing all that needed done was putting things back together and jacking it down.. so we did that sunday, put the battery back in to take it for a ride.. go out of our driveway and bam.. another damn brake line breaks on us.. so now we have to fix that.. see what we get for pushing ourselves for two days.. now we are paying for it yet today and i had to find a ride for my boyfriend to at least get to the drs tomorrow because he is out of his Kadian and going through withdrawl badly..
as for following drs orders.. yes i usualy do but i do also do some alternative medications but the drs do know about them. since I have a heart issue as well its important my cardiologist knows.. I take alot of extra vitamins and such and we do watch what we eat..
as for do we actively fight to get healthy or just give into our illness.. well i'll never be actively healthy again, i never was, but yet i'm not going to just lay in bed and give into my illnesses either..I take it day by day, minute by minute because yes my energy level can change minute by minute at any given time.. so we take it as it comes for both of us.. we try to cover for one another if the one is having a bad day the other tries to do more work.. sometimes we both just have to have our little time in the morning on our computers with our coffee and such, have a light lunch and afternoon pills then go lay down but we try not to take a nap to often because we do get used to it easily but it seems we have been having a flareup this week so we have needed it right now..
so the best to all of my fellow sufferers..I wish you all some comfort and less pain..
Much LOVE and METTA,
Tina

Thanks so much for sharing your experiences here. It's helpful to me and to others. And it reflects just how hard we work due to illness -- that full time job I talked about -- having to face tough choice after tough choice.

So much of this article is right on the money and I appreciate your sharing it with us. I have not read anything else you've written so I don't know if you've covered the topic but the whole concept of pacing has helped me become functional. Whether it's the "energy envelope" or "jar of marbles" concept, understanding how much energy it takes and how long you need to recoup is the key to not "crashing" as my one support group calls it.

As for how much to tell or not tell or when to tell...I recently became "single" again and did some dating. The first man I dated couldn't handle it when I told him what was wrong with me and the last said I didn't tell him enough. Since it's a no win situation, I've decided it's not worth the effort and am perfecting my new lifestyle of crazy cat lady living on the mountain.

I will make it a point of reading more of your writings. Thanks for this excellent article.

In addition to my articles, you might find my book, "How to Be Sick" to be helpful. It's about healing the mind when we can't seem to heal the body! It's a very practical book with lots of exercises and practices, many of which has proven to be very helpful to people. And there are two year's worth of articles on this site. Just click on "Turning Straw into Gold" and you'll see a long list. Most are on health but not all of them are.

I do find pacing to be essential although it takes discipline (more of that hard work). I also think in terms of an energy envelop and a bowl of marbles. It's very helpful.

I totally & completely agree with this article...I've had to deal with every single thing mentioned...

Thank you for writing this. It's something I can share with my family & friends so they better understand all the things I have been trying to go through for years, so they can better understand how I feel about it.

Personally though, I did get better with alternative medicine (& got worse with conventional medicine. Conventional medicine marked me as "just depressed & stressed"... even though my blood tests were always off... One test said I had cancer, but my MRI showed otherwise. Anyways, my Video EEG showed I had temporal lobe epilepsy in the end, though medication did not help me at all). I used to get anywhere from 8 seizures to 40 seizures a day... & they were so painful...I also couldn't walk...I would just be so exhausted after 2 steps, I would just collapse. Desprit, I too looked for anything with would cure me, & I came across Ulan Nutrition Response Testing (as a pre-med student at the time, it somewhat made sense to me too). The good thing about Ulan is that they only train doctors (the winning plus for me). The things they discovered were bothering me I asked my conventional doctor to see if I had it, which they confirmed. I had parasites in my brain causing my issues, & after being treated with nutritional supplements through Ulan, I now only have about 1 seizure a week, my seizures aren't as strong as they used to be, I can walk again, my blood tests are normalizing, I don't have ripping pain anymore, & the list goes on. I too have wasted money on fake cares, but I can honestly say that this helped me when no one else could, & it gave me hope that I actually can & I am getting better.

What a great article! My take away today is related to "#4. Do we push our body to the limit or do we always play it safe?Sometimes, the desire to be like healthy people is so strong that we can talk ourselves into pushing our body to do what it cannot reasonably do."

I giggled when I ready this. I have been everywhere on a wide spectrum of "energy conservation and energy consumption" as far as my body is concerned. I find the biggest thing I've learned is balance.

Sometimes I don't heed my own body's warnings and overdo things because I'm sick and tired of being sick and tired. Then I end up paying for it and saying "No, I will never do that again!" Much like the alcoholic who has yet to get into recovery and went out and got drunk and created a big mess and the next morning wakes up scratching their head while looking at the wreckage "No, I won't drink like that again!" Then they're bombed that same afternoon.

Here is an example of my past couple days: I live in the midwest and the temperature outside has been atrocious. Yesterday I had to get to two places and they were both pretty far from home. Since I knew today I was off from work and it would still be FREEZING outside (and I wouldn't want to leave the house anyway), I decided to squeeze in 2 extra errands yesterday. I knew I was going to push my body, but I wanted that feeling of "I am superwoman - efficient, competent & capable multi-tasker!" I KNEW I would be paying for it in pain today but I also knew I would be in a safe place and have enough time to rest and restore. I will be practicing my restorative yoga, journaling and will spend some time with laundry and my higher power.

I have nearly died twice since I contracted ME/CFS/FM at 10. A Bilateral Venous thrombosis in 1992 and a Ruptured Kidney in 2006. When you are in a great deal of pain for a long time sometimes something severely painful for most is not noticed until the situation is serious. I was in a rural ER and the Dr took pictures and sent them to a specialist in Australia. He analyzed them and had the ER doctor read the analysis back to him, so I got to hear it. I am a science writer, among other sorts of writing, and so understood. If I'd gone to the larger hospital I probably would have died before they got to me. They have an over the counter urine test in the US, AZO, which would have been useful. Though I knew I had an infection, I was refused a culture and sensitivity test by my HMO and if there is culpability, it is theirs.

The doctor who did not know how much fluid there was among the kidney stones was very well meaning and read my chart every morning to be sure that I was comfortable. There was a generational difference in opinions about how to avoid lawsuits. They younger Dr. was right, but I am younger too. People make mistakes.

Toni: I resonated with every bit of your article and agree with what many commenters have said: it is wonderful to be so well understood.

I have an addition to your list that we migraineurs talk about a lot: the fact that insurance companies limit the amount of pain medication they will give us per month. The problem is that if you get 15 to 18 migraines per month, as I do, the 9 pills allowed must be doled out very carefully. So not only do I have a migraine, I have to assess it: maybe it's not so bad that I need to medicate...but what if it gets worse?...and how many have I already taken this month? If I take more than 4 by mid-month, I won't have enough to get through to the end...but if I let it get too bad, then the medication doesn't work as well and I am down and out for a couple of days...

I've read all of your comments carefully. We all seem to have so much in common. I've discovered some "tough choices" that I didn't cover, however, and so maybe I'll write a follow-up article on this topic. And I hope there will be even more comments since we learn so much from each other.

As usual, Toni, you have described this aspect of chronic illness perfect.

It is a full-time job constantly thinking of all these things - and more - constantly monitoring how we feel, what we can do, what we say, etc. And, yes, it is all exhausting and stressful - just what we DON'T need.

I think #1 is one of the biggest issues. It is a tightrope that requires careful balance - sharing enough that people understand without making them feel uncomfortable or pushing them away.

I do know that healthy people don't usually understand this need to constantly assess how we feel, what we do and say, and what we are capable of. When I was first sick, my family interpreted this as an unhealthy obsession with my illness and depression. It took years and years to finally help them understand - and some family members never will.

All so perfectly explained, as always, Toni. You have been the hot topic of conversation in our online parents' group - many of the parents of sick kids are just discovering your lovely writing and words of wisdom.

The Gods of Pain must be smiling on me this evening, as I somehow stumbled upon your article. I'm in tears; wow, someone GETS IT!

I don't have CFS but incurred a neck injury from a car accident over 6 yrs ago and have been in constant pain every single day since. The severity of the pain varies, but unfortunately it is my constant companion...and one I would desperately love to break up with!

I've lost most of my friends, my family and eventually my job when I could no longer keep pretending to be ok. Not knowing from day to day (or even from morning to afternoon to evening) how I would be feeling made making, and keeping, plans increasingly difficult. I would often be late because I would have to take pills and rest before I could make it. Or I would have to cancel outright. If I did make it, the pain killers affected my concentration; if I moved the wrong way I would cry out in pain. People didn't know how to handle the situation and I didn't either. Eventually, the social invitations stopped coming and most friends pulled away. My family would tell me I could talk to them about it, but then couldn't handle it when I did. They didn't know what to do if I was crying from pain, frustration etc. It was all so far from how I used to be: independent, strong, the one they would call for help. I no longer have any contact with my family and only have one friend left. Your article really resonated with me on many levels, especially about what to talk about with friends. I don't want to talk about the pain, that I'm suicidal and it's becoming increasingly difficult to keep up my end of the conversation because I don't actually DO anything these days that I could add to the discussion. Thank God for this one remaining friend who makes sure she keeps in touch, understands if I can't talk, or i zone out, or reach my limit.

Because it was a car accident, insurance companies became involved. The driver who ran into me walked away fine, but left me with the legacy of years of dealing with his insurance agency. 6+ years later and it has still not been resolved. As you've said, trying to manage illness is a full-time job that none of us wanted. The pain is difficult enough. Add in the impact it has on your life, the inevitable depression, feelings of worthlessness etc and my cup runneth over...not in a pleasant way! Add to that the numerous medical appointments, specialists, treatment and the added burden of constant legal related medical assessments (the legal ones alone were in excess of 20 per year) and I am emotionally a mess.

I feel like I'm in an unending cycle where I can't move on; I constantly have to talk about the accident, the pain etc over and over and over again. And of course, it all gets twisted. If you cry, well, you're too emotional, it's all in your head and you just THINK you're sick. If you try to get out and do things and 'suck it up', well, there's nothing wrong with you and you just have 'motivational issues' and don't want to work! The character assassinations from the insurance companies and selective editing of anything you say or do just to wear you down so you'll give up.

I'm sorry about the pity party. I've tried to be strong for so long, but the pain itself is physically and mentally exhausting and doesn't leave any room for all the extra things.

Every day is a struggle. I still can't accept that THIS is now my life. I'm 'alive' but I don't feel like I'm 'living' because there is not much left of my previous life. Thinking about the future and is this what the rest of my life will look like leaves me curled up in the foetal position, sobbing with loss and fear.

Thank you so much for your article. Just to know that other people actually GET it, that you understand, means so much. I wish you and all of the other commenters didn't have to experience similar things, but I am so incredibly grateful to you for talking about it so that, hopefully, other people can get some small idea of some of the issues those of us with ongoing pain face.

I'm bookmarking this site and look forward to reading more from you. I'll also look into your book. Concentrating is difficult these days, but your writing and your message resonates with me. Thank you again for addressing these issues succinctly, with insightfulness and compassion. I apologise for such a long, rambling post; the pain and medication really affect my memory and concentration. To quote the scarecrow "if I only had a brain"!

So, please just know I am very thankful to have found your article and grateful for your understanding of the issues those of us with any ongoing pain face. Thank you so much for your insightfulness and compassion. You have no idea how much this article means and how much it resonates with me.

Thank you, Judith, I'll try some of your tips, very helpful. I never thought about the gardening stool, great idea. Also, I found a dry shampoo that works to stretch out time between shampoos. It's. a spray that absorbs oil and smells like grapefruit. It works perfectly with my hair type. Now my hair looks better dirty than clean, added bonus!

I have to reread your post; I can't recall what else I wanted to try,,,ha..

Thanks a lot for replying!
It made me very glad to read that my post was of some use to you. I am not able to help people as much anymore. Being sick makes it very difficult to do the things for others that I used to find so normal: baby-sit, helping them move house, etc. And helping others is such a great source of happiness! So this was nice to hear, thanks.

This brings me to a dilemma that Toni might find interesting if she is still planning to write a follow-up article: how much help do you ask or accept from others?
On the one hand, accepting help makes things possible that I would otherwise have to deny myself. If my friends didn't pick me up in their car, I wouldn't be able to visit them. And getting help with some chore or task leaves me the energy to do something enjoyable: socialize, or take a walk. This makes me happy.
On the other hand I feel the loss of my independence. If I choose to do something by myself, it gives me a great feeling of accomplishment. This is good for my self-esteem and consequently also makes me happy.

Finding the balance between independence and pleasurable activities is though. I need both.
The fact that I often can't return the favour makes it more difficult to ask for help… again and again. I can't offer my friends to drive them some other time.

There is a positive. As helping others makes me happy, likewise helping me makes them happy. So if I ask them for help, in a way, I am making them happy.
And since I have learned to ask for help, instead of waiting for it to be offered, that gives me back some of the feeling of independence. I have taken control. It also gives me some sense of accomplishment. I have done something: I have asked for help. And it wasn't easy.
Also I can offer things in return in less tangible ways.

I try to train myself to slowly change my perspective in this way. However, I still find it very difficult to find my balance in this. Asking for help remains a challenge.

Thanks to all of you for your comments. I'm so glad the article resonated with all of you. I've had lots of people add to the list… I may have to do a second post. Meanwhile, tomorrow, after I'm posting a piece on getting through the bad days…I hope it's helpful too.

Your article was brought to my attention by a member of my Chronically Awesome Foundation. We have, since reading it, used each question as a topic of our weekly support group (held via Google Hangout).
As a Foundation that supports members of any chronic illness, these were concepts that touched each of us in different ways, and brought about some very personal, very deep conversation.
Thank you so much for publishing what so many of us deal with as a part of our daily routine, our regular attempts at wellness, and our work with the medical and nontraditional medicine community regularly.
This has been more than gold to us.
Julianna Shapiro
Founder and Executive Director
The Chronically Awesome Foundation
www.chronicallyawesome.org
Dare To Be Remarkable

I'm so glad to hear that this article has been so helpful to you and your group. I work so hard on them (while being sick myself) that to get this kind of feedback makes it feel it's well worth the effort. Thank you for writing to me here.

Every single one of these is right on the money....you have described exactly what I face and have faced!!! This is a full time job in itself! Then you add 3 children with various disabilities; autism, sensory integration, adhd, learning disabilities, anxiety and depression to it and I am just barely hanging in there...
I have worked full time (not currently working) since diagnose and gone to school full time as well. I have since graduated and still cannot get a job, I swear when I go on interviews they can see something that I am not aware of....and then I play the whole thing in my mind about if I was showing symptoms I didnt even realize I was doing because I am so use to them. Then I am mentally exhausted...I cant win. I have been refused SSI because I am not MORE disabled than I am. People are shocked that I have MS...remember if you cant see it it doesnt exist? Such bull! :(
I dont know what to do anymore :(

We have decided, well I have, not to tell anyone anymore so number one on your list has made us rethink relationships. We had my husband's cousin in the house and made it all really nice at the expense of a lot of money and time that I spent working on it all and not on other items due to energy drain. How did he respond? When he got home, he had a juice from a pyramid scheme sent to me in my name and address (gosh I hope the scam does not follow me!) to help me. I sent it back to the company and have decided to let this relationship go since he does not respect how we are handling it. He knows better and told my husband by phone message to take 2 ounces of the juice to get better. What does he think I have and why would a juice fix me? My doctors cannot not fix me, and now we have our name with scammers- guess we learned the hard way. I agree on Carol's number six which now includes the insurance company cutting off my accupuncture to 12 a year but I want to add a number 7- after the cousin slam and others that would take a month of Sundays to discuss is how to live without family and support of friends. I have made a recent comment update on your other article about loss of friends and family. You will have to learn to get along in somewhat of a cutoff state. I see this being harder than being sick. Hugs to all who have to do this. My heart aches more on this than on my fibro. Just when you thought that not being able to get out of bed somedays was the bad part.

MsMaggie - Thanks for your comment here and other places. I agree that the difficulties of friends and family and support is harder than being sick for the majority of people. At least, that's my conclusion based on the people who write to me. It's such a challenge. All my best to you, Toni

As anyone who has 1 or more chronic illnesses will, I completely agree with all you say in this piece - but contacting one of my doctors about new symptoms is not a big issue for me. Of course, if something is dramatically wrong, I get to the ER. With my illnesses and medications, there are too many dangerous things that can develop.

But for other stuff..... one of my criteria is, "Would healthy people call the doctor if this symptom developed in them?" If that question alone doesn't provide an answer and it's something that has lingered for a few days, I contact my doctor and ask if it's something I should be worried about. (I used to call in, now I can email him which is nice as I can lay out the details for him.) His responses have ranged from, "I'd tell you to do just what you're doing let me know if it gets worse" to "can you come in this afternoon?" This is true with my primary care and with both of my specialists.

Obviously I have good relationships with all my doctors which helps this work, but I've sought out doctors I can work with in this way. I've had a couple of bozo doctors along the way and I've decided my health is too important to see doctors who aren't willing to work WITH me. Being able to contact them to ask if I/ we should worry about a new symptom is just one part of that.